In Loving Memory of Sandra Marlowe
April 29th, 1955 - November 12th, 2023
About Sandra's ALS Journey
Wayne & Sandra Marlowe have been married for 47 and a half years. They have five children and fourteen grandchildren. The Marlowes are a close-knit family who love spending time together and going on travel adventures. During a family meal celebrating Thanksgiving 2019 Sandra experienced an unusual choking episode. Within weeks she developed a lisp and began having difficulty with chewing and swallowing. Her doctor ordered many tests over the following months to find the reason why.
The “ALS” diagnosis came on March 24, 2020. Sandra received confirmation diagnosis of “Bulbar ALS” by a second Neurologist a week later. Because the Covid-19 pandemic had closed clinics, she was not able to be seen at an ALS specialty clinic for four months. She learned that there are no effective treatments or a cure for ALS.
Sandra was anxious to apply for a Clinical Trial of experimental medications, but all were closed for months because of the pandemic. Finally, eight months after diagnosis, she was able to travel to Holy Cross Hospital in Ft. Lauderdale, to begin participation in the Healey ALS Platform Trial. While in the 6 month trial, she have herself a daily injection containing either placebo or active drug. Then, through Open Label Extension, she administered Zilucoplan injections for 10 months.
Prior to her diagnosis, Sandra maintained an active lifestyle of recreational biking, hiking, walking, and competitive swimming with US Masters Swimming. Bulbar ALS affects speech, swallowing, and breathing first, before limb weakness presents. She began using a ventilator to sleep nine months after diagnosis and had surgery for feeding tube placement in February of 2021.
The Marlowe family has decided to support ALS TDI, as we believe in their mission to find effective treatments for ALS. Please join us to support this worthy cause.
Thank you for joining me in support of ALS TDI. There are many good causes that need funding. But this one stands out for their wise use of donations and the clarity of their goal: end ALS. In October 2022 we attended their annual Summit and Gala in Boston. We toured the ALS TDI lab and met scientists and staff. Around the walls of the office are pictures of people living with, or who have passed from ALS. The powerful reminder of their “why” is ever before all who work there. They are compassionate and dedicated. Most have been impacted personally by ALS.
That's my picture hanging in the lab in Boston! I help inspire the scientist to go faster for a cure.
What a great weekend with ALS TDI!
ALS TDI is the only non-profit biotech laboratory in the world solely focused on discovering treatments for ALS. Their scientists work around the clock. Every year they have a summit, including an awards presentation, and a fundraising gala in Boston. Last year I received the "Courage and Love" award that honors Mary Lou Krauseneck, a faith-filled, dynamic woman whose thoughtful ways endeared her to all. She loved and was dearly loved by her family and friends. I was surprised and honored. Please join me to raise funds and awareness so we can find effective treatments for ALS!
The 2022 Mary Lou Krauseneck Courage & Love Award
— Sandra Marlowe
This award is presented to a member of the ALS community who demonstrates unwavering courage and optimism. The recipient of this award selflessly leads by example to uplift and inspire those around them. They believe in the power of positivity and remain committed to finding treatments for ALS. This individual consistently serves as a model of strength, courage, and love in the ALS community.
To read more about the awards: https://www.als.net/news/leadership-awards-2022/
We were honored to have a photo with Dr. Fernando Vieira, the CEO and CSO (Chief Scientific Officer) of the ALS Therapy Development Institute during the Leadership Summit.
Please click on the link to see the video of me getting the Mary Lou Krauseneck Courage and Love award. https://vipelnk.com/5hiuozq?fbclid=IwAR2VpEChQRviWmg2Q2DeK2H559FGNLyEOtlloXeqqL9HQtE9mf2QgueT71M
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